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When Breastfeeding Doesn't Work Out

by Anne Smith, IBCLC

There are very few medical problems that prevent a mother from breastfeeding her baby. There are some situations where nursing must be temporarily interrupted, but if you maintain your milk supply by pumping, you can almost always resume breastfeeding when the medical problem is resolved.

Situations where breastfeeding is contraindicated include:

• Cancer
• AIDS
• HTLV-1
• Abuse of certain illegal drugs

Although breastfeeding does reduce the risk of breast cancer, it does not eliminate it, and a small percentage of women are diagnosed with breast cancer while they are lactating. For these women, treatment involves discontinuing breastfeeding and immediately beginning treatment for carcinoma. Breast lumps are common in the lactating breasts, and most are not cancerous. If a physician feels that a mass should be biopsied, this can be done under local anesthesia without weaning the baby. Many non-invasive diagnostic tests can be carried out without interfering with lactation, such as CAT scanning, X-rays, MRI, and ultrasound. Radiation of the breast damages the woman's breast tissue, and often adversely affects lactation capability if she tries to breastfeed subsequent babies, but if only one breast is irradiated, nursing can continue on the other breast. For mothers diagnosed with other forms of cancer during lactation, they may choose to continue nursing unless their treatment involved chemotherapy or treatment with radioactive compounds. All radioactive materials (taken orally or intravenously) and chemotherapeutic drugs cross into the milk and are potentially toxic to the infant. In some cases, mothers are able to discontinue breastfeeding until the drugs are out of their systems, and then resume nursing again. If a nursing mother is diagnosed with any type of cancer, she needs to discuss her feelings about nursing and her treatment options with her obstetrician, pediatrician, and oncologist.

The human immunodeficiency virus (HIV) that causes AIDS can be transmitted through human milk, although the rate of transmission appears to be low. Between one-quarter to one- third of infants born to HIV infected mothers will become infected with the virus. In most cases transmission occurs during late pregnancy and delivery, but some studies suggest that one third of these infants are affected through breastfeeding, which suggests an average rate for transmitting the virus through breastfeeding of one in seven. Mothers in advanced stages of the disease are more likely to transmit the virus than mothers in the early stages, as are mothers who become infected before the baby's birth. Because AIDS is an incurable, invariably fatal disease, even the small risk is unacceptable in areas where the safe use of human milk substitutes is an option. The current AAP recommendations are for HIV infected mothers not to breastfeed their infants. Feeding options include using formula, heat-treating the breastmilk before feeding (if this option is chosen, very specific guidelines must be followed), and use of donor milk. Human milk banks screen all donors for HIV and other diseases and pasteurize all donor milk in order to ensure that harmful viruses are destroyed, while preserving as many nutrients and antibodies as possible. The WHO (World Health Organization) has concluded that in communities where the infant mortality rate is high, infectious disease and malnutrition are the main cause of death, and conditions such as extreme poverty or lack of sanitary water supply don't allow for the safe use of human milk substitutes, mothers should be encouraged to breastfeed their children without regard to their HIV status, because the risk to her infant of not breastfeeding is greater than the risk of transmitting the virus via the milk. As AIDS spreads to the heterosexual population, more and more research needs to be done regarding issues regarding AIDS and breastfeeding.

The virus HTLV-1 (human T-cell leukemia virus type 1) can develop into a highly malignant disease that is nearly always fatal. This virus is not common in the US or Europe, but is on the rise in parts of Africa, South America, Japan, and the Caribbean. Since breastfeeding is a major route of transmission for this virus, it is recommended that women who are carriers of the virus not breastfeed their infants.

All drugs of abuse, including amphetamines, cocaine, heroin, PCP (angel dust), and marijuana, are contraindicated during lactation according to the recommendations of the AAP. However, there is a vast difference between these drugs. The mother who abuses cocaine, heroin, or PCP is putting her infant in extreme danger of serious side effects, addiction, or even death, and most certainly should not breastfeed. Obviously, the optimal situation is for all nursing mothers to abstain from the use of any drug during lactation, but the reality is that many mothers are going to use drugs regardless, so the question is whether the risk of taking the drug outweighs the risk of not breastfeeding. The mother who takes amphetamines in therapeutic doses can continue to nurse her baby, and even when used in excessive amounts, the side effects are jitteriness, irritability, and sleeplessness. Marijuana is the most commonly used illegal drug among nursing women. The use of marijuana can decrease the mother's milk supply, and in large doses can produce sedation and growth delays. The active ingredient in marijuana (THC) is concentrated in human milk, but many studies have shown no differences in outcomes on mental or motor development or growth patterns. Because there have been no reports of infant health problems solely due to use of marijuana during lactation, the current recommendation is for mothers who smoke marijuana to continue to breastfeed, but to cut down on the amount smoked and to not expose the infant to second-hand smoke since that increases his exposure to the drug (these recommendations are very similar to those regarding smoking cigarettes).

Other than the drugs mentioned previously, there are very few medications that necessitate discontinuing breastfeeding even temporarily. Except in a very few situations (such as the mother who must undergo chemotherapy immediately), breastfeeding should continue while the mother is taking a drug. While most medications do appear in mother's milk, the average dose that the baby receives is about 1% of the maternal dose. The small amount of medication that appears in most mother's milk does not make nursing riskier than not nursing. There are health risks for both mother and baby when the baby does not breastfeed. In situations where a drug is not safe for a nursing mother, there is almost always an alternative medication that can be used in its place. It is rare for there to be only one medication to treat a specific condition. The PDR (Physician's Desk Reference) widely used in the US and the CPS (Compendium of Pharmaceuticals and Specialties) widely used in Canada are poor sources for accurate breastfeeding information, because drug manufacturers have a tendency to say that all drugs are contraindicated for nursing mothers in order to protect themselves from legal liability, and not because of well founded concerns about the drug's effect on the nursing infant. The nursing mother's health care provider needs to review closely the documentation on drugs and their levels in breastmilk before making decisions that may cause early or unnecessary weaning.

There are some medical conditions in the mother which may necessitate temporary weaning or cause a temporary decrease in milk supply, but breastfeeding can nearly always be resumed after the condition is resolved, especially if the mother is encouraged to maintain her milk supply by pumping. These conditions include hypothyroidism, pituitary dysfunction, untreated tuberculosis, excessive postpartum bleeding, hepatitis B and C, active herpes lesions, and many types of surgery.

There are several breast problems that may affect a mother's ability to breastfeed. These include congenital lack of glandular breast tissue and breast surgery, including biopsies, breast augmentation, and breast reduction. A very small percentage of women are born without enough glandular tissue in their breasts to produce a full milk supply for their babies. Often, one breast will look very different from the other, and the mother reports never experiencing normal breast enlargement during pregnancy. These mothers can still breastfeed, but will need to offer supplements with a bottle or feeding tube.

Any woman who has had breast, chest, or cardiac surgery should check with her surgeon to see if any functional breast tissue was affected by the procedure. Breast augmentation usually doesn't involve severing milk ducts or destruction of functional breast tissue, and is usually compatible with lactation. On the other hand, breast reduction is a much more invasive surgery that almost always has an adverse effect on lactation. The impact on lactation depends on the type of reduction surgery done, with the transplantation technique (involving removing and reattaching the nipple and severing all the milk ducts) almost always making lactation impossible, while other techniques that are less invasive may allow full or partial breastfeeding. A lot depends on whether or not the surgeon who performed the procedure made a deliberate effort to leave the blood supply and nerve pathways intact. The mother who has had or is considering breast surgery needs to discuss the details of the procedure and it's effect on her ability to lactate with her doctor. Mothers who have had breast surgery need to closely monitor the baby's weight to establish the potential need for supplemental feedings.

Medical problems in the infant can also cause problems with nursing, but these conditions rarely contraindicate breastfeeding. On the contrary, infants who are ill need the many nutritional and immunological benefits of breastfeeding even more than healthy infants, except in rare cases. One of these rare disorders is galactosemia, a hereditary metabolic condition that occurs once in every 85,000 births. Galactosemia is a deficiency in the liver enzyme that metabolizes lactose. It is one of the few situations that requires total and immediate weaning, because all foods containing lactose (including breastmilk) must be completely eliminated from the baby's diet and replaced by a special formula.

Babies are often incorrectly diagnosed with "lactose intolerance" when they exhibit signs of fussiness or colic. True lactose intolerance is rare, and occurs when an infant is born with a primary lactase deficiency. This means that he is born without any lactase, the enzyme needed to break down lactose, or milk sugar. In this rare situation, the baby will be unable to process the lactose in milk and must be fed a special lactose-free formula in order to survive. Lactose intolerance is caused by a slow decrease in the body's production of lactase, and occurs gradually over a period of many years. The symptoms don't appear before the age of four or five, and usually not until young adulthood. Transient (temporary) lactose intolerance occurs when a baby suffers from prolonged diarrhea (this is much less common in breastfed than in formula fed babies, but it can occur). This type of "nuisance diarrhea', caused by intestinal illness, antibiotic treatment, excessive consumption of fruit juice, or sensitivity to solid foods, can cause the lining of the baby's intestines to become irritated. It usually clears up within two to four weeks. The best treatment for this condition is to continue breastfeeding . Human milk is a natural fluid that is quickly and easily digested, and is the best food to give babies with diarrhea. In cases of transient lactose intolerance, time -- not weaning -- is the best solution.

Another rare metabolic disorder is PKU (phenylketonuria). PKU is a lack of a liver enzyme that causes the baby to be unable to breakdown the amino acid phenylalanine so that it builds up in the blood, causing irreversible damage to the brain and nervous system if untreated. PKU screening is done routinely in all 50 states and in more than 30 countries. Health care professionals used to think that babies with PKU could not breastfeed due to the fact that breastmilk contains phenylalanine. However, research has shown that since babies need some phenylalanine for normal growth, and since breastmilk contains lower levels than formula, the mother can continue breastfeeding while supplementing her baby's diet with a special low-phenylalanine formula called Lofenalac. Babies with PKU need to have their weight and phenylalanine levels carefully monitored, but in the long run, breastfeeding can make the management of PKU babies easier. Studies have found that babies with PKU who are breastfed score 12-14 points higher on IQ tests than babies fed a diet consisting solely of Lofenalac. The treatment plan for PKU babies is handled by a doctor and a dietician specializing in metabolic defects, and the plan should include breastfeeding.

Other medical conditions that may cause difficulties with breastfeeding include cleft lip and/or palate, Down syndrome, neural tube defects (such as spina bifida), hydrocephalus, hypoglycemia, jaundice, congenital heart defects, reflux, cystic fybrosis, hypothyroidism, celiac disease, and allergies. (A special note about allergies: infants are not "allergic" to their mother's milk, but on rare occasions, they may be allergic to a food the mother has ingested - most often, the offending food is cow's milk, and eliminating it from the mother's diet eliminates the problem). In all these situations, breastfeeding is not only possible, but is recommended. Careful monitoring of milk intake, adjustment of medications, corrective surgery, and supplemental feedings may be required, but breastfeeding these infants offers many important health benefits, as well as increased bonding and closeness. The mother who has a child with a medical problem already has to deal with the stress of losing the ideal of the "perfect infant" she imagined. Every effort should be made to encourage and support these mothers in their efforts to nurse their special babies, so that their infants receive the benefits of breastfeeding and the mother doesn't have to deal with the additional loss of not being able to nurse her baby.

The mother who is unable to breastfeed or who has to wean prematurely experiences the loss of something very important to her, and often goes through the same stages of grief as the person who is coping with the loss of a loved one: denial (Of course I can breastfeed!...), anger (Why me?), bargaining (If I could just nurse this baby, I'll never ask for anything again.) depression (It makes me so sad to see other mothers nursing their babies) and finally, acceptance (I know that this is not something I can control, and I did everything I could.lots of babies do fine on formula.). It is helpful to be aware of these normal stages, and try to work through each one. It is important that you work with your health care team to explore all the options that might make breastfeeding possible, such as the use of breast pumps, tube feeding devices, and delivery of supplemental feedings (whether expressed milk, donor milk from a milk bank, or infant formula). Make sure that all these options are fully explained to you.

Sometimes even mothers who are strongly committed and follow all suggestions or instructions to the letter are still unable to breastfeed. In these cases, you need to try to feel good about the fact that you try to provide the best for your child, while making every effort to r accept the reality of the situation and the fact that sometimes factors beyond anyone's control make breastfeeding impossible no matter how highly motivated you are or how hard you tried. Once you have reached the acceptance stage, it is easier to place your breastfeeding experience in context, and move on to focus on dealing with the other important aspects of your health and your baby's.

For additional information about topics discussed in this article, you may want to check out the articles "When Nursing Mothers Get Sick", "Drugs and Breastfeeding", and "Lactation Supression" (this article also includes information about human milk banks and how to contact them regarding donor milk).

There is a website called "MOBI" (mothers overcoming breastfeeding issues) which provides information and support for women who are dealing with breastfeeding problems. The web address is: mobi@egroups.com.

Anne Smith, IBCLC has been a La Leche Leader since 1978 and IBCLC since 1990. As a nursing mother, LLL Leader, and IBCLC, Anne has worked in many areas over the years. She has led support group meetings, taught breastfeeding classes, trained breastfeeding peer counselors, worked one-on-one with mothers to solve breastfeeding problems, helped thousands of mothers with breastfeeding questions over the phone, held workshops for health professionals, taught OB, Pediatric, and Family Practice Residents breastfeeding at Bowman Gray School of Medicine, and run a breast pump rental station for the past eleven years.